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Patients Breast cancer

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Topic of the discussion

Carenity Member • Community manager
Posted on
Good advisor

Breast cancer treatment plan can vary from one person to another, even though there is always a common base. I invite you to talk about your experience, compare your opinions and views on the subject of breast cancer treatment.

- What treatment you are currently undergoing? Do you find it effective so far? How does it make you feel?

- How and by whom was your treament plan established? Was your opinion taken into account?

- What do you expect from the new treatments for breast cancer, and the onse that have not yet been developed?

If this topic seems interesting for you, or you have something to say, don't hesitate to comment.

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Thank you all for your participation and for help and support you give each other here at Carenity!

Beginning of the discussion - 9/24/17

What do you think about your current treatment?
Carenity Member
Posted on

I'm currently undergoing 3 weekly Herceptin subcutaneous injections and daily anastrozole tablets. I'm told that the Herceptin is necessary to prevent a very aggressive tumour from coming back. It's an open ended treatment so I have no idea how long that will go on for. It has side effects which haven't hugely affected me so I'd rather keeping having it than not.

Until last October I was taking 4 weekly Zoladex injections, however that has been changed to daily Anastrozole tablets, I find the side effects far worse and quite difficult to live with. I have regular blood tests to check my oestrogen levels and as they are low, it would seem to be working. Like with Herceptin I don't know how long I'll be taking this drug, when I started 5 years was the figure that was bandied about, however recent research would seem to point to 10 years so who knows.

Still, 7 years and cancer free so something must be working!

I must admit I love all this "Treatment plan" I'm sure I'm not the only one but patient participation is only required in so far as the patient just does as they are told. My oncologist and his team are breathtakingly bad at discussing or explaining. Results from tests just disappear into the communication black hole that is the oncology department at the my local hospital where they go to die! My opinions have never been taken into account and emotional blackmail is usually resorted to ensure compliance. It has led to some very lively discussions!

I do a lot of personal research and study about breast cancer and read all about new treatments. I hope that in the future cancer treatment won't be so medieval or barbaric.

What do you think about your current treatment?
1

Carenity Member • Community manager
Posted on
Good advisor

Thank you @maddoglady for your answer and for sharing your opinion!

What do others think about their opinion being taken (or not) into account?

What do you think about your current treatment?
Carenity Member
Posted on

Hi Everyone - I agree that you are not taken seriously if you have an opinion.  I am not happy that you get a one line letter telling you that your recent mammogram after your treatment is "satisfactory".  What does "satisfactory" mean?  Does this tell me that the area where they operated is still looking good even though it is still sore and feels like a big lump!  How can I check myself for any other lumps that may develop?  I just feel that you are told to go away and don't ask questions (my team hated all the questions I asked!)

I was told after the op that really I have the "all clear" - how can that be if the mammogram is "satisfactory"?

Rant over.......

What do you think about your current treatment?
Carenity Member
Posted on

Hi Sue,

I'm glad I'm not the only one! I was recently sent for an ultrasound and a biopsy to check that a new side side effect wasn't cancerous. I got the result of the ultrasound from the oncologist's Secretary when she phoned to make me an appointment for further investigation!

I waited 7 weeks for the biopsy result only to find that the oncologist had received it a month before. He can't understand why I was so annoyed with him.

What do you think about your current treatment?
Carenity Member
Posted on

It's disgusting the way we are treated.  I've just been to the genetic department as both my mum and grandma had breast cancer, but because my cancer isn't related to the brca gene I would have to pay £490 to have the test.  Even then if it's negative there still may be a gene that could be at fault, but because they haven't recognised any other related genes it would be inconclusive! ! 

What do you think about your current treatment?
Carenity Member
Posted on

I'm currently undergoing 3 weekly Herceptin subcutaneous injections and daily tablets. I finish the herceptin on 19th October but will carry on with the tablets for the next five years.  I will do anything or try anything rather than do this treatment again.  

What do you think about your current treatment?
Carenity Member
Posted on

Hi Ive just been diagnosed with breast cancer 9mm & lymph node armpit 12mm. I'm currently waiting for chemo port to be fitted next Tuesday and I start Herceptin on Wednesday 5hr I'm HER-2 Positive. I start my first chemo on Thursday. I'm currently in ROSCO Trial but offer potential 4 cycles of chemo then op. This offers random chemo but I've been told I'm on FEC. It's been getting my heard around it & at times I find it hard to sink in. I've been told it's been caught early and outlook is good. No spread following scans. I'm terrified of going next week although I'm a strong person & not going to let this spoil me attending my daughter's wedding in May ????? so I'm determined to do everything I can. I've changed my diet to purely plant based and take supplements. I just want to get this started so it's over asap. Had all my long hair cut short in prep for it probably falling out which upsets me. I'm going to try the cooling cap I've heard mixed reports. The hospital moved very quickly and I have a great oncologist. So I'm terrified but want this done so I can fight it because it's not beating me. ?

Pauline

What do you think about your current treatment?
Carenity Member
Posted on

Hi Pauline

You must be very scared at this time as I know I was.  I didn't have to have chemo, but had radiotherapy which again I was frightening.  The main problem with treatment is most medical professionals don't expect you to ask questions.  I asked if I could tape the appointment so that I didn't forget everything that I was told.  I don't think they expected me to ask over 15 questions!  Make sure you keep asking questions and if necessary write down the answers so you can refer back to them.  As you say they have caught it early and the lump is small (mine was 9mm). Good luck with everything and let me know how you are doing.  Sue xx

What do you think about your current treatment?
Carenity Member
Posted on

Good luck with treatment. I had chemo and radiotherapy for triple negative. Breast cancer. I wore the cold cap and persevered with it but I came out ok at the end. It was uncomfortable at first - but I survived. You are starting your treatment now- so all the best- but - honestly - you will be fine. Marg 

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